"you cannot protect yourself from sadness without protecting yourself from happiness"

On the day before,

I read a Billy Collins book,

and for a few hours everything was beautiful.

But then,

you had a seizure,

and that was not beautiful.

The next night,

I couldn’t sleep,

even though I was spent.

I placed my hand on your head as you dreamt,

palm above the tumor,

and paced through five stages of grief.

Now, there is still beauty:

a burning blue sky,

the cut of a blackbird wing across the sun.

But I can't stop thinking about the cancer,

and how I don’t know when it will wake,

and pull you under.

but then, 

I guess,

no one ever does.

-----------------

I still have a bandaid on my leg that I put on before the cancer diagnosis. It was that recent. Not that I haven't showered since then, but I guess bandaid technology has reached an apex. I was shaving, using a relatively new Venus razor but one that recently fell apart a little, and nicked my skin. Not a big deal. But it feels like a different person put on that bandaid, in a different life. 

One thing many people no longer know about me is that I used to write, a lot. When I was an emotional teenager, it was the lens through which I processed life. I wrote journals. I wrote poems. I wrote books. And then I finished college and went on to medical/graduate school, and the words bled out of me. Maybe because I was happier, which is a good thing, of course. Maybe all artistic people are at least a little bit depressed. But I stopped writing. For the last week, however, I've felt so many things inside of me and nothing comes out. I think that can't be good for me. So here I am again, 15 years after really calling myself a writer, trying to write. To share this  journey with family and friends, but also to get the toxin out of myself.

On July 21, I had a normal work day. On Mondays I usually work from home. I spent the day developing 5' untranslated region annotations for my current research project looking for enrichment of pathogenic genetic variants in 5'UTR regulatory elements. I was actually productive. It wasn't a bad day. The kids were a bit crazy, and it took a while to get them in bed. Eric was coming off a weekend of nights, and was exhausted and of course chronically behind in his clinic notes. But we managed to go to bed at a reasonable hour for us, around 11pm. 

I was awakened at 1:15 AM by the seizure. As a physician, I have seen many seizures. But typically the breakthrough seizures I see in the hospital are subdued, sometimes semiologies that only a mother knows and no one else would recognize as pathology. However, this was a violent thing. Eric's arms and legs were jerking wildly. He had foam and spit coming from his mouth. His eyes were open but with the pupils rolled back. He was making strange noises like a babbling baby, occasional yells. 

I am trained in many life supports (ACLS, PALS, NRP, BLS, etc). I was exhausted from taking melatonin earlier, but I didn't really think much. I immediately recognized it as a seizure. He was choking, so I rolled him on his side. I looked at the clock to try to time the duration of the thing. It was over within two minutes. Afterwards, he still wasn't responsive. If I shook him violently, he would open his eyes, and make a noise, but he wasn't really there. He'd go right back to sleep. I had an instant where I thought about how terrible it would be if he was like this forever. His body was an empty shell. The man was gone.

I know most sane people would call 911 at this point. But I knew the seizure was over. He was responding, just post-ictal, which makes people very sleepy.  I wasn't panicked yet, since I know epilepsy can develop at any age, and that lack of sleep lowers the seizure threshold. Residency is rarely described as a restful time. Eric had been chronically sleep deprived. So instead of calling 911, I called the RN on call at his doctor's office. She asked the standard questions, probing for signs of meningitis or encephalitis as an inciting event. There were none. He had no fever, no rash. She eventually told me I should just call an ambulance.

I probably should have called an ambulance. But I was very sleepy, and all three kids were asleep down the hall, and as he had had just one seizure, it didn't seem likely he would have another. So I called a Lyft to take him to the ER. I helped him put on his pants and his shoes. By then he was awake enough that he sort of understood what I was saying when I told him he'd had a seizure. I helped him into the car. I monitored the app, making sure it arrived at the BMC ED. And then I tried to go back to sleep.

It took a long time.

I was awakened at 0700 by my phone ringing. I had clinic, so needed to get up anyways. Eric was crying when he answered. He almost never cries. That was my first moment of real fear. "They did a CT," he said, "and they found a mass. They think it's malignant. Can you come here?" 

It felt like a dream. I tried to call a few friends who didn't answer, but I ultimately decided it was probably pathetic to need help doing things I normally did by myself every day. So I called my attending, told her I couldn't come to clinic. I got up the girls. I made lunches, toasted Eggo waffles, turned on Bubble Guppies for Charlie in the back. All the things I normally do. But I was crying the whole time, pretty uncontrollably. Charlie, who is three, kept asking why I had water on my face. She cries all the time when she's sad or angry, but couldn't conceive that the same thing could happen to me. Quinn, who is 9, knew what was going on and was panicking. I told her the truth, that her dad had had a seizure and they found a mass. She kept screaming, "But what if he dies??? Will he be okay???" and it was hard to answer, because I knew I should say yes, but I didn't know, and I didn't want to scare her, but I also didn't want to lie. So I said I didn't know, but I hoped so. Truth enough, but a poor salve for her anxiety.

Somehow I managed to get the younger two to daycare. Quinn insisted on coming to the ER. However, when we got there, they wouldn't let her in (the BMC ED is a bit like the wild west- it's not a place for children, in retrospect). Eric came to the waiting room and hugged her, sat with her a little, while I curled in a ball in the hallway by the bathrooms. I called a friend to come get Quinn. We waited outside at the ED entrance, and I held her small, shaking shoulders while I thought about how inconceivable it was that it was a beautiful, warm day out and this was happening to me. 

I just finished reading "Emperor of all Maladies" for the T32 grant that I'm on. Every year they have us all read a science-related book and discuss it. I know cancer is very common. I know that it's random, that it can happen to anyone. It's a bit like lightning striking. It's struck plenty of my family and friends. But it still seemed impossible that it could strike so close to me. 

Later, with Quinn safely gone, I sat by Eric's cot in the hallway of the ER and tried to understand from hearsay what was going on. The mass was in his left frontal lobe. Somehow, Eric said, the doctors were convinced this was a malignant tumor. I know most brain tumors are "benign" (though "benign" is a tough term in the brain due to the limited space and sheer mass effects of even "benign" tumors), and that CT scan isn't great for characterizing tumors, so I was very confused about how the doctors knew it was malignant. Eventually, a neuro critical care fellow came. He asked a lot of questions to try to tease out whether this could be infectious, as Eric had had a chronic pneumonia (that we now know was likely due to aspiration during a prior unwitnessed seizure). But the timeline didn't add up for that. He started getting the pneumonia around a year ago. He broke his scapula atraumatically 3 months ago while working nights. He was home alone in bed at that time, and woke up, confused and in pain. I maybe should have thought he was post-ictal, but everyone who has worked nights knows how confused you are when you wake up during the day. We did ask the ED then if the fracture could have been due to a seizure, but he had no headaches or history, so they said it was unlikely (now we know, it was almost certainly due to the muscles violently clenching during a seizure, in combination when his vitamin D deficiency since he is a resident and never sees the sun). Anyway, he had no symptoms in between the pneumonia, the fracture, and now. The pneumonia had gone away with antibiotics. The shoulder had been healing (though it was re-fractured by that morning's seizure). He had no fevers, chills, night sweats. Nothing to suggest fungal balls or abscesses or any other bizarre pathogen in his brain. 

The fellow wouldn't tell me why they thought the mass was malignant from the CT alone, but eventually the rest of the neurology team showed up, and the attending was more blunt. (During all of this, I realized that we often, out of caution, withold a lot of information from patients while we are uncertain about a diagnosis, and that is probably very frustrating for them.) The neurology attending said there was a ton of vasogenic edema (swelling) around the tumor, and benign tumors typically don't have that much edema. Also, because of the location they could surmise the cell type involved wasn't the typical benign ones like the ependymal cells that line the ventricles, but rather the brain tissue itself (probably glial cells, as neurons are mostly non-dividing, and division is required for the mutations that provide fitness to the cell and eventually build it into a tumor). He said it could be an infection or a benign tumor, but that was unlikely, and highest on his differential was a malignant brain tumor. Or a metastasis (hardly any better, but more common than primary brain tumors). 

He dropped this news in the ER hallway, and then the whole neurology team started schlepping off back to their consult cave. As a medical student, I always felt impotent, unable to dispense any useful medicine or advice to patients, always an appendage to the team. But as everyone else walked off, the medical student with neurology asked me if she could get me some water or a blanket, and it was the kindest thing anyone said to me all day. So medical students aren't totally useless after all, it turns out. 

I had been scared before, but I was terrified then. I know the most common type of brain tumor in adults is a glioblastoma. Glioblastomas are terrible things. The median survival is 12-18 months, and 95% of patients die within five years of diagnosis. My stomach hurt. I hadn't eaten anything, but I wanted to throw up. I felt like if I threw up, maybe I could get this terrible news out of me. I went on a walk around the hospital. I needed to be alone. I was crying so much that many strangers came up to me and asked me if I needed help. I did, but what could anyone do? No one could make this go away.

We waited in agony for the brain MRI. Those usually happen overnight at BMC (planned MRIs happen during the day), but some kind soul in radiology got Eric's MRI moved up. He went at around 2PM or so. I tried to listen to the book I've been reading on Audible ("A Prayer for the Crown-Shy"), but I couldn't actually hear any words. I listened to it for five minutes, and then I realized I had no idea what had been said. I gave up on that. I started to read more about glioblastomas on my phone, but that was too depressing. I ended up doing the most mindless thing I could think of and playing "Candy Crush," which promises to "swipe the stress away." It did not, but I can hardly blame the game developers for that. They probably didn't plan for the waiting-in-the-ER-for-your-35-year-old-husband's-terminal-brain-cancer-diagnosis situation. 

Neither did I.

Eventually Eric was rolled back beside me. He was sleeping. Resident friends of his came and went. I ate a cookie they brought me, both hungry and also feeling like I would/could never eat again. Eventually, the neurosurgery resident came back and told Eric (not even bothering to introduce himself to me, I might add, not helping with the surgeon stereotypes) that based on the MRI, the tumor was most likely a low-grade glioma (the younger cousin of the glioblastoma, its precursor). We were so relieved to hear that news. MRI isn't diagnostic for brain cancer, but it is decent at picking out glioblastomas. They are usually irregular and contrast-enhancing and angry-looking. So the neurosurgeon and radiologists couldn't be certain what type of tumor it was, but it didn't look like the terrible ones (glioblastoma, CNS lymphoma, metastases), so that was our first good news. 

Eventually, the neurologists and neurosurgeons miraculously actually communicated with each other and with the ED team and came up with a tentative plan. Eric will have an fMRI to assess whether the tumor is in the "eloquent" area (parts of the brain associated with movement and speech), as tumors in this area are often not totally resectable and are associated with a worse prognosis. There are no neuro-oncologists at BMC, so they suggested going to Dana Farber, and put in a referral. After the fMRI, Eric will see the BMC chief neurosurgeon in clinic to get a biopsy scheduled. The biopsy will be diagnostic of the type of tumor (astrocytoma or oligodendroglioma being the two types of low-grade glial cancers). They also sent genetic testing and immunohistochemistry from the biopsy to determine if the tumor carries certain mutations such as IDH mutations or, for oligodendrogliomas, the t(1;19)(q10;p10) translocation. These mutations are associated with a better prognosis (slower growing tumor, potentially amenable to targeted biologics). After the biopsy and pathology/genetic results, they will plan a resection and adjuvant therapy if needed (standard chemotherapy, targeted antibody therapy to the IDH mutant enzyme, or radiation). 

We went home from the hospital. Our parents flew in, both mine and Eric's. Eric took a few days off work, and we have all been trying to process. I made an appointment for Quinn to see a therapist. I started doing work again. I'm going to see some clinic patients tomorrow. Life is somehow going on. But this is such a painful mental place, right now. So much is unknown.

I am grateful this is not a glioblastoma, no joke. But low-grade glioma still has an overall survival of 10-15 years, and Eric and I planned a whole life together. I imagine him dancing with our daughters at their weddings, or celebrating our own fiftieth wedding anniversary. I know that some people survive longer with low-grade gliomas, but some people also pass away even sooner. I'm trying to be hopeful and stay positive, but I'm the kind of person that worries about all possible outcomes. 

At this point, the tumor is most likely (but not certainly) a low-grade glioma. It could still be something worse (fingers crossed). Of low-grade gliomas, an astrocytoma is more likely at Eric's age, and more common overall, than an oligodendroglioima. However, oligodendrogliomas have a better prognosis (slower growing, less likely to transform into a glioblastoma). He is most likely (but not certainly) going to have a tumor with an IDH mutation, even if it's an astrocytoma. There is a new therapy, an antibody targeting the mutant IDH enzyme (which, ironically, is a part of the Kreb's cycle- my work as a clinical biochemical geneticist has to do with helping kids who have deficiencies of these enzymes, and here is my husband with a likely overabundance). The drug is called Vorasidenib, and the clinical trials for low-grade glioma were promising (even many inoperable tumors shrank or did not progress). It was just FDA-approved last year. Based on where Eric's tumor is located and his lack of neurological deficits, it is likely (but not certain) that the neurosurgeons will be able to totally resect the tumor. Because glial cells are neuronal support cells, it is impossible to surgically cure a low-grade glioma in adults due to residual microscopic tumor burden, but hopefully they can get as much out as possible. If they get it all out and it's grade 2 and has favorable genetics/cell types, he may not need additional therapy other than monitoring, or may only need Vorasidenib. If the variables aren't all favorable, he may need traditional chemotherapy or whole brain radiation. In addition, most people need repeat surgeries due to tumor recurrence over the years, and frequent MRI scans to monitor for tumor regrowth/transformation to higher grade. 

Another annoying thing is that our medical insurance doesn't cover Dana Farber (or anywhere other than BMC), so we are having a hard time seeing a neuro-oncologist. I have all this information from reading papers myself and talking with friends who are neuro-oncologists, but we can't actually get Eric an appointment yet. This is because we need an out of network exemption, which supposedly has been submitted (but our insurance company doesn't have it yet). Heaven knows insurance companies will do anything they can to avoid paying for medical care, despite that being their only job. Obviously we are going to make it happen regardless of what insurance says, but it's still unclear how much we will have to pay out of pocket.

 

Eric can't drive for at least six months due to the seizure, so is going to have to Uber/take public transportation to work. We did buy an electric scooter yesterday to help get him to and from the commuter rail. Of course, BMC, the main safety net hospital in Boston, isn't on the subway (and most poorer neighborhoods in Boston also aren't on subway lines either, because why would the city make it easy for people without means to get medical care?), but there are bus routes and nearby-ish train stops etc. He's hoping not to have to extend residency too much, so planning on going to work other than after surgery/radiation or when otherwise unable. I'm still trucking along in my research and waiting to hear about grants. 

We have truly felt an outpouring of love and support in the past week, which has been my lifeline. Eric's friends in residency all donated to get him a massive Uber gift card. My brother started a GoFundMe, and many of my residency/fellow friends have donated so that we will hopefully have enough to pay the out of pocket neuro-oncology costs. People have brought us meals, prayed for us, and called to check in. Eric's program director gave us Dodgers versus Red Sox tickets so Eric could fulfill his dream of seeing Kershaw pitch.  It's been amazing to see everyone come together to life us up.

I have so many complicated feelings right now. I am so grateful, but it also feels weirdly like vacation, but a bad vacation. There's just this feeling in my stomach all the time that things aren't "right," whatever that means. Also, all this money to decrease stress is so helpful, but I wish the cancer would just go away, and I would give all the money back and more. I'm so happy it's likely not a glioblastoma, but I also don't want a median life expectancy of 10 years. I'm selfish about many of these feelings and I know it, but I can't help what I feel.

I just want answers, but it's going to take time, likely a few months for all of them. And in the meantime, I'm trying to hold it together for Eric and my kids, but so grateful for all the people providing support for us during those moments when I can't. 

It will be a while before we have updates, but I'll let you all know when they come. <3